Using the power of management information system technology to support the goals of centers for independent living.

Since their inception, CIL's have provided a vital organizational link between people with disabilities and the values and principles of the independent living movement. Over the past 25 years, the independent living movement has become a powerful force for change on behalf of people with disabilities. From its origin as a challenge to the service system for people with disabilities, the independent living movement has grown into a national force for change - a different way of viewing a population that is an important segment of our society, and a forum for those who have been disenfranchised. Its core values of self-reliance and equal access for people with disabilities were the foundation of the Congressionally-authorized independent living program and the driving force behind the services provided by community-based CIL's across the country. These services reflect deeply held beliefs about empowering people with disabilities to increase their independence. In addition, they emphasize eliminating the barriers that prevent people with disabilities from living fully integrated and productive lives.

In the 1970's, CIL's emerged as new organizations, formed by people with disabilities who took on leadership roles in developing and running programs. These programs emphasized self-determination and equal rights, and the CIL's became expressions of a new activism among people with disabilities. The programs developed by CIL's translated the independent living ideology into a community-based vehicle for integrating services and social action. Through CIL activities, the philosophical principles of the independent living movement were brought to life through a consumer-oriented service model based on individual choice and personal control. Three types of services evolved - individualized support services to promote self-reliance, group services that established peer networks, and community advocacy activities to ensure equal access to all aspects of community life. The cross-disability focus of the centers emphasized the person over his/her disability.

CIL's have undergone a remarkable evolution since their beginnings, when small groups of people with disabilities, many of whom were volunteers, would staff the centers to help their peers obtain essential resources, develop advocacy skills, and develop strategies to reduce discrimination and barriers in their communities. While this early model has not changed in its basic thrust, many changes have occurred in terms of the organizational and staffing capabilities of centers and in the range of influence they have on the entire service delivery system.

Over the past decade, the principles and concepts of independent living have become more widely known and accepted, and the legitimacy of the community-based service model has been reinforced through national standards for the federally-funded program. CIL's have increased in numbers through both federal and state funding support, and they have provided policy input at local, state, and national levels on the many issues that affect the lives of people with disabilities. Programs and services have expanded to include a wider range of disability populations, and staffing patterns have expanded to respond to a broader range of service and program needs. Community efforts have also expanded to encompass access issues for all disability populations and to promote full implementation of the Americans With Disabilities Act (ADA).

As CIL organizations developed, directors, program staff, and board members felt the need for internal systems that would enable them to document services and activities and enable them to report on the level of services provided and the outcomes resulting from their efforts. Also, as centers developed and proliferated across the country, the need to provide evidence of program effectiveness increased at national and state levels. By 1984, federal mandates to develop national standards and conduct an evaluation of the program funded under Title VII Part B had heightened awareness that the value-driven orientation of the program needed to be supported by the capability to demonstrate results. These factors increasingly highlighted the need for a highly tailored management information system that would reflect the unique philosophical and programmatic characteristics of the independent living service model and that would support program management and accountability requirements.

Creating A Field-Based

Management Information

System for Independent Living

(MIS-IL)

In 1982, CRM staff started working with leaders in the independent living movement to design an MIS for CIL's. The design process was grounded in the belief that independent living services have a very positive impact on the extent to which people with disabilities lead productive and meaningful fives; therefore, the MIS must enable the community-based organizations to demonstrate this impact, as well as the level of service support provided. The development and pilot testing of the system began from the premise that it would be a user-driven, field-based system. All phases of development extensively drew upon the perspectives, insights, and values of staff who had operated centers and had provided both consumer and community advocacy services. Staff from more than 40 CIL's were directly involved in designing and pilot testing various components of the system.

In developing the system, CRM responded to several significant needs that were perceived across the independent living movement. Eric Griffin (Executive Director of Independence Associates, Brockton, MA), who worked with CRM during the early development of the system, described the objectives of the developmental effort in the following way:

"The nontraditional, consumer-oriented nature Of service delivery approaches and organizational characteristics of centers for independent living have served as both the basis for their success as well as for unique developmental challenges faced by centers and the field as a whole. One challenge has resulted from the absence of service models centers could draw from in developing consistent definitions of services, and the lack of operational capacity to gather and evaluate information about the results and impact of center services. In responding to this need for the development and implementation of an information and evaluation system appropriate to centers for independent living, the following objectives need to be considered:

* to make practices and approaches explicit, thereby operationalizing values of the independent living movement;

* to develop evaluation capacity that supports internal, philosophical and public accountability; and

* to provide centers with a clear and systematic means of gathering concrete evidence of success."

Embracing the challenge of designing and ultimately installing a comprehensive MIS was a bold step forward for the CIL's participating in the initial development process. Jean Mankowsky-Upham, who was the executive director of the Vermont Center for Independent Living (VCIL) when CRM first began working on the system, spoke about the challenge in the following way:

"Accepting the task of helping to design a comprehensive documentation system was a significant and very important step for a nontraditional, civil-rights-oriented organization like VCIL. VCIL's hope for the system went beyond the basics. We knew that our programs were having significant impact on both the disability community as well as on traditional service providers and the Vermont population as a whole. We knew that the work of our programs went beyond the concrete delivery of services - the design of our programs and the way our services were delivered empowered those we worked with in a way traditional services do not. In addition, we knew that our community advocacy program, although not designed to provide services to individuals, did alter significantly both the way individuals with disabilities were viewed by the general population and the way individuals with disabilities viewed themselves. We did not, however, have the means by which to demonstrate the impact and success of our activities.

"What led us to work with CRM to design a system was the belief that it would be capable of capturing both concrete service statistics and the more subtle but, in the long run, more important ways that independent living centers empower those of us with disabilities and help to create greater equality for all citizens with disabilities."

CIL representatives defined their internal needs for documentation forms and procedures and specified their reporting needs. Their active involvement ensured that the system reflected the independent living service philosophy and approaches, effectively tracked services and activities, and provided for a meaningful determination of the consumer and community outcomes that result from center efforts.

The result is the "Management Information System for Independent Living," commonly referred to as "MIS-IL."

Several important features of this system have evolved that reflect not only the information system needs of CIL's but also contribute to an understanding of essential MIS requirements for other federally-funded, community-based, consumer-oriented organizations.

* It provides a framework and common definitions for services. Organizing independent living services for consumers means giving attention to (1) the specific areas where consumers need services and seek to achieve independent living goals (this represents the content or focus of services such as communication, equipment/assistive devices, and daily living/self-care); and (2) the types of services that are provided in response to consumer needs and goals for independence, such as skills training or peer counseling. Based on input from CIL representatives, the system provides definitions for the core services provided by CIL's as well as a range of other services. Through extensive field input, common definitions were developed for 14 content areas of assistance. Also defined in the system are the various community activities conducted by CIL's and community impact areas. Providing a framework and common definitions for services addressed an important need to define the various dimensions of the evolving service model within the MIS so that there would be a shared understanding across CIL's about the characteristics of core services that were being documented. This was essential to ensuring consistency in reporting across centers.

* It accounts for variations across organizations. While providing a common program management framework, MIS-IL was designed to meet the needs of different types of CIL organizations, large and small, rural, urban, and suburban.

* It is comprehensive. It covers all funders, programs, and services. As CIL's evolve organizationally, programs and services tend to expand and there is an increasing need to track services for multiple funders. Enhancements to MIS-IL over the past few years have ensured that the full range of individual and group services provided by CIL's as well as community activities are incorporated into the system and that all service activities can be tracked by specific funders. Without this flexibility in an MIS, growing community-based organizations often become burdened by multiple and overlapping recordkeeping systems in order to respond to the documentation and reporting requirements of different funders.

* It supports a consumer-oriented approach. Implementing the consumer control concept in independent living services requires procedures that emphasize that consumers, not staff, make the major decisions about their independent living goals and participation in services. The goal-setting process incorporated in MIS-IL supports this consumer-oriented approach. The system provides a framework for facilitating consumer development of an independent living plan and enables CIL's to track the multi-dimensional goals achieved by consumers.

* It is responsive to external reporting requirements and internal information needs. MIS-IL was designed to strengthen organizational capability to respond to federal and state reporting requirements, as well as to support internal information and program management needs.

* It establishes a common database. MIS-IL allows state networks of CIL's to establish a common database for reporting statewide accomplishments, such as consumers served, services provided, and outcomes achieved.

The extensive input provided by CIL representatives during the design process highlighted the importance of providing a comprehensive recordkeeping system. Thus, the research and development phase gave considerable attention to producing a complete consumer record system that would include an application process, an independent living plan, and forms and procedures for tracking all service activities. The recordkeeping system had to accommodate service provision to different disability populations and allow for the easy recording of information by CIL staff. hi addition, MIS-IL includes forms for easily documenting community activities.

The Consumer Service

Component

As noted above, independent living services are delivered through a service approach that emphasizes consumer control, self-help, peer role modeling, and equal access. Because of the cross-disability emphasis, there is rich and necessary diversity in how CIL's deliver services. For example, service methods may vary somewhat in response to the different needs of individuals with mobility, sensory, emotional, or cognitive disabilities.

"In order to live independently, disabled persons require a wide range of support services according to their disability type. Persons with severe physical disabilities usually require assistance with personal care, domestic tasks, transportation, equipment maintenance, and modifications of home and workplace for architectural accessibility. Those with sensory disabilities may require assistance with interpersonal communication such as that provided by readers and interpreters. Persons with mental impairments who wish to live independently may require some degree of supervision and assistance with cognitive tasks. All persons with disabilities and their families can benefit from a single source of information and referral about services and service providers" (Toward Independence, 1986).

Cutting across these differences are a core set of services that include information and referral, peer counseling, skills training, and advocacy. Other services include housing assistance, evaluation of personal assistance needs, interpreter services, and transportation assistance. Centers also often help to coordinate consumer services across various agencies. CIL's indicated that an MIS had to document the full range of services provided, track services by specific funders, and report on the number and types of consumers served for all services as well as the level of support (number of hours/units) provided. The system responds to these needs as well as CIL interest in being able to track the independent living areas for which assistance is being provided (i.e., the purpose or content of services). CIL representatives identified 14 areas of service assistance that are tracked through MIS-IL: consumer/legal rights, communication, daily living/self-care, education/training, employment, equipment/assistive devices, finances/benefits, healthcare/nutrition, housing, mobility, personal assistance, personal growth/self-help, social/recreation, and transportation. The consumer services component of MIS-IL provides CIL's with extensive reporting capability. The system tracks consumer demographic information and multiple disabilities for each consumer and provides agencywide or satellite office statistics as well as reports for specific funders, programs or departments, disability populations, ethnic populations, and geographic locations. It provides CIL directors, program managers, and board members with a complete picture of consumer service needs and the level of services provided.

Documenting and Reporting

Consumer Achievement of

Independent Living Goals

To provide a structure for documenting and reporting consumer achievement of independent living goals is one of the major challenges in the development and refinement of the system. In the independent living program, consumer needs are translated into goals through a supportive consumer-controlled, goal-setting process. The development of a component in MIS-IL that would incorporate this process was influenced by two major principles: (1) that taking control over one's life and participating more fully and productively in society is dependent upon many inter-related goals, and (2) that goal setting must take into account the individualization necessary for consumers who vary widely in their needs, interests, and abilities.

Since 1982, CRM has worked with the CIL's in developing, validating, and continually refining an index that would describe the multidimensional array of goals that would enable people with disabilities to achieve independence. This has involved analyzing hundreds of consumer records as well as interviewing consumers and center staff to construct a set of statements reflective of the broad and varying purposes for which consumers seek support. The result of this effort is the MIS-IL Goal Index for Independent Living, a comprehensive listing of almost 250 goals used as a reference tool by consumers and CIL staff in the development of consumers' independent living plans.

Significant effort was devoted to ensuring cross-disability representation in the index and the inclusion of goals that reflect independent living options and priorities for people with physical/mobility disabilities, people who are blind or have a visual disability, people who are deaf, and people who have other types of disabling conditions. Initially validated through a structured process with 12 New England CIL's, the index has been updated and expanded based on its use with different types of disability populations by CIL's in various regions of the country. The consumer goals are organized according to 14 content areas and are cross-referenced in the system to five domains. As shown below, this framework allows CIL's to document and demonstrate the areas where their consumers have identified and achieved goals and the extent to which consumers are working on goals that relate to knowledge or skill development, acquiring specific aids or benefits, changing their situational status, or personal changes.

The results of the goal setting process are recorded in an independent living plan that includes goals set by the consumer, activities/services for accomplishing goals, the mutual responsibility of the consumer and staff person in completing activities/services, and documentation of progress and goal achievement. The use of this component of the system provides staff within and across CIL's with a common framework for tracking consumer progress in the multidimensional areas associated with achieving an independent lifestyle; provides CIL staff with a structure for developing an ongoing, goal-oriented plan with consumers as well as an individualized record of consumer progress toward goal achievement; and enables ClL's and CIL networks to demonstrate annually the overall level of consumer goal achievement.

The Community Services

Component

CIL's organize and conduct a variety of activities to reduce community barriers to independence and improve options available to people with disabilities. Therefore, the development of the MIS-IL also involved specifying the range of activities and impact areas associated with community-oriented efforts. Center representatives indicated that their community activities include:

* community initiatives to ensure that the interests and perspectives of people with disabilities are represented;

* presentations and workshops; community advocacy to promote equal access to society;

* consultation and technical assistance on ADA implementation; and

* outreach and public education efforts.

CIL's were also interested in having the capability to demonstrate their impact on areas that affect the extent to which people with disabilities live as full and equal participants in community life. Areas of community impact that are tracked through MIS-IL relate to: disability awareness; ADA implementation in public accommodations, employment, telecommunications, and state and local government; architectural accessibility; access to educational/training programs; communication accessibility; increasing funding support for personal assistance services; accessible housing; access to social and recreational programs; and accessible transportation.

The community services component of the system also provides valuable information CIL's can use to demonstrate their level of effort and accomplishments. Community Activity Reports show the number and types of community activities conducted, including specific ADA-related activities, total hours/units spent on each type of activity, and the number of activities devoted to each community impact area.

Using State-of-the Art MIS

Software to Empower CIL

Organizations

Based on the requests of MIS-IL users to expand the system's capability for meeting their increasing information and reporting needs, CRM released a new software version of MIS-IL in 1992 based on Paradox, a full-featured relational database management program that provides extensive reporting capability. In creating the new release, a structured design process was conducted to acquire direct input from 35 ClL's that had used MIS-IL for several years. Every aspect of the system was reviewed, refined, and/or expanded based on user recommendations. Extensive beta testing occurred with several CIL's. The result is a highly versatile system that makes data entry and accessing information as easy as possible. It is easy to customize funder and program codes to meet each organization's specific needs, add or delete information, and generate reports at any time.

A major interest of the CIL's was to have a wide range of options in producing reports, so the system was designed to provide powerful and flexible reporting capability. The new version of the system produces user-defined reports for any time period and for multiple funding cycles. MIS-IL generates 22 standard reports with report selections representing more than 100 user-defined options and produces consumer lists and mailing labels. Basic report categories are: Statistical Summary Reports, Individual Consumer Reports; and Internal Management Reports that show service activities of each staff person. CIL's obtain the system through a service contract with CRM. Extensive resources and training materials are also provided.

Benefits and Uses of the MIS-IL

Our experiences with CIL's have taught us much about the benefits and uses of a management information system in these community-based organizations. There are a number of uses that go beyond external accountability. These relate to use of the system to support a consumer-oriented approach to service planning and delivery, program management and staff supervision, and planning and resource development. CIL's have used the independent living plan within MIS-IL as a positive tool for planning relevant and focused services based on consumer needs and goals, as a means for effectively reviewing progress, and as a record of the consumer's control over service participation. Through MIS-IL, CIL directors and program managers routinely examine the extent that core services have been provided as well as the source of other services used by consumers. The extent to which different disability populations have been served is important information to monitor. It is related to outreach strategies, networking, and referral relationships. Reviewing demographic statistics on services to various disability groups may indicate under-representation by certain groups. Managers can use this data as a basis for modifying or expanding outreach activities, improving program accessibility, or providing staff development opportunities to increase disability representation in services.

MIS-IL data have been used for staff supervision. Information related to the number of consumers served by each staff person, average contact time with consumers, and total service hours/units provided are examples of supervisory data available to managers. The MIS-IL also provides data on the type and extent of community activities conducted by individual staff members. MIS-IL data have been used for a variety of planning purposes. Information requests can be examined to identify consumer needs for services. Trends in service provision can be used as a basis for targeting program expansion. Consumer goal achievement and community outcome data can be used to determine program effectiveness and to identify program improvement needs. CIL's also have used the system reports to demonstrate effectiveness with funding sources (i.e., for indicating the current level of program effort and program results, for documenting unmet needs, and for demonstrating accountability).

Over the years, we have surveyed MIS-IL users to determine various applications of the system. The following comments by CIL directors are illustrative of the varied uses of the management information system in CIL's

"Valuable consumer data and center information can be constantly monitored. Cross-disability can be examined by reviewing service data to see which disability groups are having service needs met. Thus, one cornerstone of the movement, cross-disability, can be quantifiably documented within an ILC."

"The system allows me to see how we are interacting with other agencies and organizations in the community. I can see where our referrals are coming from and why people are being referred. I can see where we are referring people and why. It also helps me to see where we should be getting more referrals and to target our outreach efforts to those agencies or groups."

"Of particular significance to me is the documentation of advocacy efforts which result in changes in our communities on a daily basis. This type of information, when collected, synthesized, and produced through the system, provides tangible evidence of our impact."

"What truly interests me is the ability to use the MIS as a tool to increase community support for our efforts, i.e., fundraising. Annual reports depict the impact of our services, the need for our services, and the value of our services. In the world of fundraising, it's much easier to sell a quantified, successful program than just a great idea."

The implications of building internal capability at the individual center level are significant. Most centers are a great storehouse of data on independent living services and their impact. The new version of MIS-IL allows for greater use of data by ClL's in understanding how effectively staff are providing services, what specific populations are most frequently being reached through center efforts, and the types of consumer and community outcomes that are occurring. This information is critical to long-range planning and in clarifying a ClL's overall effectiveness and where it needs to improve and/or expand.

The MIS-IL represents a powerful tool for ClL's. Its development was stimulated by interest in the field and by a vision held by many of its leaders on how an MIS could enhance program quality and increase understanding of the unique aspects of the independent living program model, while at the same time responding to the growing call for accountability. Throughout the development process, the interest and involvement of dozens of independent living leaders and supporters was critical. Coming from many quarters, they collectively generated a strong sense of momentum that helped sustain the effort through the many complex stages of conceptualizing the system, designing it, piloting all aspects, refining it, and putting it to the test of implementation in centers.

The most significant benefit of the MIS-IL is that it leads to informed, data-based decisionmaking. It supports effectiveness and accountability in a way that does not undermine the philosophical principles associated with independent living. Importantly, it provides a vehicle for documenting and communicating to major stakeholders and key audiences the scope and impact of the independent living program.

A management information system (MIS) can be a powerful resource for community-based, consumer-oriented organizations whose mission is to promote equal opportunity and equal access for their constituents. State-of-the-art information system technology builds organizational capacity and enhances capability to effectively document and track services, demonstrate results, meet reporting and accountability requirements, conduct data-based long-range planning, and increase funding support.

Developing a suitable MIS for a consumer-oriented service program requires far more than technical expertise, however; it requires an in-depth understanding of all facets of the service model and the philosophical principles on which it is based. This fundamental tenet was the foundation of an extensive research and development effort conducted by the Center for Resource Management (CRM) to produce an MIS that would support the organizational and programmatic goals of Centers for Independent Living (CIL's).

Content                      Domains
Communication                Knowledge: Goals involving the
Consumer/Legal Rights        basic knowledge and information
Daily Living/Self-Care       people-with disabilities need to attain
                             and manage an independent living
Education/Training           lifestyle.
Employment                   Independent Living Skills: Goals involving

Equipment/Assistive Devices the development and use of

Finances/Benefits            skills and practices associated with
                             living independently and having control
Health Care/Nutrition        over one's life.
Housing                      Aids, Benefits, Services: Goals related
Mobility                     to acquiring aids, benefits, and
Personal Assistance          services needed to participate fully
Personal Growth/Self-Help    and productively in society.
Social/Recreational          Situational Factors: Goals related to
                             improving a consumer's situation related
Transportation               to education, employment, housing,
                             legal rights,  and transportation.
                              Personal/Social Changes: Goals related
                              to personal confidence and the
                              social skills  with equal participation
                              in society.

New Social Security Regulations

Affect Evaluation of Cardiovascular

Impairments in Disability Decisions

Effective February 10, 1994, new regulations published in the Federal Register affect the way that the Social Security Administration (SSA) is evaluating disabilities stemming from cardiovascular impairments in adults and children. The new rules reflect state-of-the-art medical science and technology in the evaluation and treatment of these impairments. To develop the final regulations, the agency consulted with experts from medical professional organizations and federal and state staff members with experience in evaluating disability claims involving these conditions.

The new regulations result in a number of changes. Among the more important are:

* Place less emphasis on diagnosis and more emphasis on a practical assessment of the impact of the disease on the individual's ability to function;

* Update the rules to reflect current medical knowledge and practice by, for example, adding heart transplantation to the list of disabling impairments, and require more information about the long-term effects on an individual's functioning of abnormalities that no longer are considered to be invariably disabling - such as certain heart attacks;

* Provide more guidance on how to document the severity of the condition, the role of treatment, and the purchase of tests and other medical evidence; and

* Expand the rules for children to give the same attention to the disease in childhood as formerly was given only to adult impairments.

Social Security pays disability benefits under two programs: Disability Insurance (SSDI) and Supplemental Security Income (SSI). Under the SSDI program, benefits are paid to disabled workers, their disabled widow(er)s, surviving divorced spouses, their children disabled before age 22, their dependent children under age 18, and in some cases the parents of eligible children. The SSI program pays benefits to people who are age 65 or older, or blind, or disabled and whose income and resources are limited. Monthly SSI payments also are made to children who are disabled or blind.

To expedite the identification of individuals with the most severe impairments, Social Security uses a Listing of Impairments. It contains examples of some of the most frequently seen disabling conditions in the Social Security disability programs. Anyone who is not working and whose impairment is described in the Listing or is equal in severity to a listed impairment is disabled under the SSA criteria.

The listing is never used as the basis for a denial. If an individual's impairment does not meet or equal the severity of any listing, SSA considers what the person can still do in spite of his or her impairments and the person's age, education, and past work experience to decide whether or not the person is able to work.

In the case of a child filing for SSI payments, before making a decision SSA looks at the child's ability to perform tasks that other children of the same age are able to do-dressing or feeding oneself, for example.

Bibliography

[1.] National Council on the Handicapped, Toward Independence, Washington, D.C.; U.S. Government Printing Office, 1986.

Dr. Lachat is President, Center for Resource Management, Inc. (CRM), which is dedicated to promoting excellence and self-improvement within organizations and to enhancing organizational capability and effectiveness. CRM has extensive research, development, training, and technical assistance experience in the independent living field at the national and state levels, as well as with community-based organizations that provide independent living services.